Clinical- Special Populations- Children -

Patient Determination of Disease Self-Management Goals- 12/23/2005

At the Hill Health Center in New Haven, CT, we initiated a new program to improve asthma care to our pediatric patients several years ago.  It involved a standardized assessment sheet to determine the severity and present level of control of the patient’s asthma as well as a thorough history of their triggers, the environment, related health conditions and compliance with their treatment plans.  This information was then applied to the NHLBI Guidelines and disease management was adjusted accordingly.  In addition, all patients received Asthma Action Plans (as did their schools/daycares), were assessed with peak flow meters if old enough, received equipment such as dust mite bedcovers and referrals for home environmental assessments and to specialists such as pulmonary and allergy when control was problematic.  After six months we were gratified that we had met or exceeded all of our goals for improved control such as recent disease free days, missed school, trips to the ER and hospitalizations.  We were shocked, however, when we looked at the results of our scoring on patient satisfaction with their care.  It had worsened significantly!  How, we asked, could satisfaction have declined if all these measures of better control had improved?  Well, when we asked the patients and their families they said that they were less satisfied because they had to come in more frequently for care, spend more time monitoring their disease and, often, take more medicine.  They did not weigh the improvements in care that we were measuring as heavily as we did and thus they did not offset the greater burden of the care they were receiving.  We realized that it would only be a matter of time, therefore, before patient compliance with our care began to flag and, with it, the improved management measures we were tracking.  What we needed to do, and what has helped sustain our results over the past several years, has been to interject into the assessment process from the very outset questions about what the patient’s and/or their family’s goals for improvement were.  When they began to focus on specific quality of life measures that were important to them such as playing outside with the other kids, not having to leave games early, being able to get upstairs more easily, or being able to get to sleep without coughing, then, when asked in follow-up whether they saw improvement in them, we found that their satisfaction with their care rose significantly above the original baselines.




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